Respiratory failure

[Ellie]

It certainly makes communication more difficult too.

What about nasal pillows for daytime NIV use Peter, rather than the full face mask? xx

[Doug Carpenter]

NIV 24/7

Hi Peter

Our journeys, our MNDs and related circumstances are all unique. But may I offer some encouragement over wearing an NIV during the day. It is definitely not the beginning of the end.

I should explain. I am virtually immobile from the shoulders down. This means that when I am put somewhere, e.g. bed, riser-recliner or power chair, I cannot move from that location. Therefore, day or night, having a two- metre air hose is no additional handicap.

At night I wear a ResMed AirFit F30 covering my nose and mouth. This is secure and comfortable, but, as you say, it interferes with communication. During the day I switch to a Philips Respironics DreamWear under the nose nasal mask (Ellie referred to nasal pillows). These are widely worn by people with sleep apnoea.

Once the single strap has been properly set and the soft silicone pad settled into place I hardly know I’ve got it on. I can talk, eat and doze very comfortably.

With this combination of masks my blood oxygen saturation has remained constant for almost eighteen months.

I can remove the nasal mask for periods of, say, ten minutes so that the carers can wash my hair or shave me, for example, but I wear it the rest of the time because it makes my breathing so much easier and more comfortable, especially talking to visitors.

I hope this information is reassuring.

Doug

[PeterPan]

What about nasal pillows for daytime NIV use Peter, rather than the full face mask? xx

Thanks I did try that in hospital but my mouth kept getting blown open !

[Ellie]

I did try that in hospital but my mouth kept getting blown open !

You may not need as high an IPAP with the nasal mask and/or for daytime use, i.e., when you're not supine.

I have two different NIV settings, a day one and a night one.

Something to consider maybe, it's a shame if a mask inhibits your speech. xx

[PeterPan]

Something to consider maybe, it's a shame if a mask inhibits your speech. xx

There is only one person in the world who understands my speech now and we do
have lots of laughs (and frustrations!) so not really a big issue 😀

[MMG]

I’m completely with you peterpan! Shocked by how much I need it now. What a good idea to have 2 machines!! I’ll get on to my hospital. Good luck! X

We were advised that it is NICE guidance to issue 2 at the outset. My husband had 2 issued last year. Doesnt yet use them as breathing still OK - fortunately

[TinyLady]

Doug Carpenter - thank you for your detailed post. I am learning so much from all of you. Whilst I don't need NIV yet, I feel so much more confident of what to expect and ask for as a result of this type of post. Really appreciated x

[Ellie]

My husband had 2 issued last year. Doesnt yet use them as breathing still OK - fortunately

I'm very sorry for being so blunt but... was it the hospital who said that your husband's breathing is OK or does he feel it's OK? (just wondering why he was given NIV, presumambly preprogrammed) xx

[WheelsOfSteel]

Hiya folks
Just to let you know I am reading all of this as valuable advice for the future.
I am still breathing on my own, but I can feel the limited lung capacity starting to kick in - so it's only a matter of time until NIV.
It was mentioned at my last (and indeed first) respiratory consultation a couple of weeks ago, and I should be seen by them again in 2 months.

[Ellie]

I am still breathing on my own

That's the thing though Eddie and, well, all nearly-newbies, NIV isn't just for when you're struggling, it's best started early, before you have any obvious signs of breathlessness or trouble getting good quality sleep.

That's why pulmonary function testing and/or overnight pulse oximetry tests are so important - I was in respiratory failure with no obvious physical signs, but the tests proved otherwise.

If you do decide to use NIV, remember that it's a support for your respiratory muscles, cuts down on the amount of hard labour they need to do and increasing their effectiveness at maximising O2 and minimising CO2 in the blood.

I fear that too many people put off starting to use NIV because they think it's the start of the end when, in fact, those extra months of use could well have the opposite effect - please don't fear NIV, it's not the enemy 😉😘

[Hope]

Ellie thank you for your wise words. I will bear them in mind, I have a respiratory appointment soon. x

[WheelsOfSteel]

NIV isn't just for when you're struggling, it's best started early, before you have any obvious signs of breathlessness or trouble getting good quality sleep.
please don't fear NIV, it's not the enemy 😉😘

Wise words as ever - thanks for the advice and encouragement Ellie

[Claireflo]

NIV isn't just for when you're struggling, it's best started early, before you have any obvious signs of breathlessness or trouble getting good quality sleep.

I wish my Dad's consultant was reading this as she has patronised me each time I've raised monitoring of Dad's breathing by saying "we treat the patient and their symptoms rather than doing tests for the sake of it".

I read the MNDA guidance about regular monitoring and asked about it at the second consultant appointment to be told the above. The physio ended up writing to the consultant to ask for the overnight monitor and all we were told of the results was that it was good. I asked again 4 months later as we could tell his breathing was declining and got the same response. 4 months later with no consultant appointment in sight the physio asked for a referral to the sleep/NIV clinic as he was concerned, along with the hospital as Dad ended up in A&E (due to the mucus issue). The referral was made and the ear lobe blood test showed raised levels of bicarbonate in the kidney and they said they arrange overnight monitoring and would likely recommend NIV.

Dad was still not having headaches or confusion when waking which is what the consultant said would indicate monitoring was needed, if other medical people hadn't asked for the referral I expect I would have got the same response as I'd had before.

At our last appointment she didn't mention his breathing despite having had a letter 10 days before from the sleep/NIV clinic. When I showed her dad's copy she just said his kidneys were OK.

Sadly the consultant appointments seem to be pointless, other than an opportunity for me to be patronised despite having driven a 4 hr round trip in the hope of gaining some value from the appointment.

[Ellie]

Dad was still not having headaches or confusion when waking which is what the consultant said would indicate monitoring was needed

It makes me both sad and mad when I hear things like this, Claire - monitoring respiratory function should be an integral part of your dad's ongoing care, similarly swallow and physical assessments.

Respiratory failure can start much, much earlier than this symptom which, in itself, is not a universal symptom... (I never exhibited classic physical CO2 retention symptoms but my blood gases said I was: numbers don't lie 😏)

Is there any hope of bypassing the Neurologist and your dad getting a referral directly to a Respiratory Consultant? I gather he doesn't attend an MND Clinic - might that be an option? xx

[Claireflo]

Thanks Ellie, another of her sayings is that "we treat patients not numbers". I used to come away feeling like a rubbish daughter pushing for something he doesn't need when all I want is the best possible care for him. Sadly she's apparently the top MND consultant in Bristol.
Thankfully with the physio getting involved he's now being reviewed by a separate respiratory consultant. To be honest he's struggling so much with the mucus he can't cope with the thought of anything else medical at the moment. I'm not sure if the mucus issue will affect how he gets on with the NIV if/when he decides to try it.